Quality Improvement Requires Even the Youngest Patient Participation

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As a mom of two teenaged daughters, both of whom are living with type 1 diabetes (T1D), my passion of helping to improve medical care has never waned. If anything, witnessing the diagnosis of first, our three-year-old toddler, and then three years later, our eight-year-old grade-schooler, catapulted that desire to make even more positive change. Today, when people ask how I got started with improving care, it is easy to explain that the first diagnosis taught me what I needed to know while the second diagnosis taught me what I didn’t want to know. With a deep desire to change the latter, I started attending local T1D support group meetings, joined hospital/clinic committees and began advocating for change all the way to Capitol Hill. What I didn’t realize was that my voice was not only advocating for others, it was teaching the very same children that I sought to help; specifically, my own two daughters.

There is nothing like the prophetic ‘aha’ moment to strike when you least expect it. This came to me after a rather typical clinic appointment. Because we are a family with two patients, our appointments are often timed so the girls can see their provider at the same visit. For years, I had cultivated a ‘Bag of Fun’ for our appointments and my daughters would sit quietly, playing with sticker books, coloring sheets or enjoying small toys that appeared only during those long visits. As their mom, I was busy with talking to the medical assistant, nurse, nutritionist, social worker, and most especially, their endocrinologist. I was the kind of mom that tried to stay on top of the monthly logs and brought along binders, records, and questions for seeking answers to better ways of managing our T1D care. As the doctor and I discussed ways to lower their A1c while allowing the good ‘ole mantra of ‘Kids first, diabetes second,’ I never once thought my daughter(s) were listening. In fact, I thought they were so happily engrossed in play, that I barely thought of my use of words that included things like, ‘High A1c’ or ‘forgot to bolus’ or ‘will try better.’ Innocently spoken but still, to those young ears it sounded suspiciously like I was getting a scolding.

Hind sight is everything because that is exactly what happened. Walking out of the appointment, my oldest daughter burst into heavy, hot, shameful tears and explained that she felt like she hadn’t done well during the past three months with her T1D. This outburst caused my youngest daughter to start crying and to say the same while I watched in bewilderment, not sure what to do. Didn’t we just have a great appointment? Trying to calm them both down, I frantically thought of how to handle this situation and could only come up with, “What would you say to another child that went to her T1D appointment and felt like you did?” This moment instantly became a gift as the first C.S. Mott Children’s Hospital UM Teen Update form was created. It not only gave my daughter’s a voice but it became the best way to feel empowered while living with a disease that sometimes takes that feeling away. After all, despite our best family efforts, we cannot control T1D, we can only nudge it, plead with it and beg it to do our bidding.

From that point forward, our family realized the importance of ensuring that kids have a voice in their medical care. After creating the form, the girls were put in touch through our social worker with the amazing Dr. Joyce Lee M.D., MPH, who is a physician, designer and the Robert P. Kelch, M.D., Research Professor of Pediatrics at the University of Michigan. Dr. Lee’s work focuses on the creation of learning health systems using the methods of clinical informatics, improvement science and patient-centered participatory design, research of social networks and patient innovation, and the integration of design thinking and the maker movement into healthcare. Dr. Lee’s type of creative quality improvement has been the perfect synergy for allowing children like my daughters, to be able to express their desires to make change while improving care at the same time. By engaging not only adults, but youth as well, our improvements are often more targeted in tackling the root of a problem.

A great example of design thinking that lead to a creative and improved quality outcome is the creation of the Diabetes Emoticon App. While most adults might not verbalize the need to use emoticons to discuss routine, daily T1D tasks, children did as much of their communication is through the use of apps and texting. The result? Many of the users that have downloaded the app have actually been adults that are communicating with other adults. My favorite example is from a spouse that felt uncomfortable checking to see if her husband was checking blood sugar. Their communication positively increased when a light-hearted emoticon could be sent instead of a perceived ‘tone’ of a written or oral communication.

Recently, the T1D Exchange hosted a Collaborative Learning Session in Denver, Colorado. During a session that focused on Engaging Kids in QI, a participant shared a simple learning through a survey targeted at pediatric clinic patients. The question asked what patients least liked during clinic visits. Overwhelming, the patients shared that they disliked the routine specimen collection. They felt so strongly in not liking it that some of the patients said it made them not want to come to their appointments. After review, the providers and CDE determined that it was not necessary to collect specimens from all patients and the patient reported outcomes positively increased substantially.

Getting youth engaged is not challenging. Some kids are more likely to be incentivized by monetary rewards and others through the need to fulfill community service hours or even to build up their resumes. Most importantly is that adults take the time to listen and then, to share their learnings to create better processes, products and improved care. The risk of engaging youth is none but the risk of not listening is great. Our community of quality improvement must include even the youngest patients in order to build a better world for all.

—Amy Ohmer, NaturallySweetSisters.com

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